Inside the Survivor’s Guide
AFE and Infant Loss
Infant loss is without question, a traumatic experience that will take time and support to process. It is important to know that you are not alone and support can be obtained through many avenues including the AFE Foundation. The roller coaster of emotions following infant loss can be compounded by the experience of an Amniotic Fluid Embolism. Processing grief, memorializing your baby, learning to accept your new body, grappling with infertility or pregnancy after infant loss are some common experiences following infant loss.
How to speak about your loss
Everyone processes their loss and grief differently and we encourage those who experienced infant loss to seek therapy and find supportive spaces such as infant loss support groups. You may also find support through family and friends; however, your experience can be difficult for others to understand. It is okay to communicate to family and friends that it is too difficult to speak about your experience if you are not ready to share or if you are not receiving the type of support you need.
Finding a space where you feel heard and understood can take time and energy that you may not think you have, but it is an important part of healing. Cultural norms and expectations can also present a barrier to openly discussing your experience and emotions. Emotional isolation can develop if it is difficult to find support, so it is important to keep in mind that you are not alone and your emotions and experiences are valid. Very valid!
The stages of grief are not linear and there is no step-by-step guide on how to speak about infant loss, but having open conversations in a safe and loving space can help you process your experience and deal with the emotions associated with grief.
Check out:
AFE Foundation Infant Loss and AFE Support Group
Postpartum Support International Pregnancy and Infant Loss Support Group
Return to Zero Facilitated Support Groups (BIPOC and LGBTQ+ offerings)
Ways to memorialize your baby
As you continue to process your grief you may find that you would like to do something to memorialize your baby or you may decide that memorializing your baby does not align with your healing process. Remember that everyone grieves and heals differently and you will be supported in your choice. If you are interested, there are a number of creative ways to memorialize your baby.
- Hold a memorial service
- Send out a Born Still announcement
- Creatie a memory box with photos, handprints and footprints, clothing worn by your baby, and other items precious to you and your baby
- Order Custom jewelry or keepsakes with their cremains, fingerprints, or your breastmilk
- Order Memorial artwork or sketches (check out Etsy)
- Donate to causes in their honor
- Dedicate a park bench or plant a tree in your baby’s honor
- Design and obtain a tattoo
- Create a memory garden
- Pen a journal to your child
- Spend time in a place you frequented while pregnant or where you had thought of taking your baby/child.
Anniversaries and reminders
Anniversaries can be a time to honor your baby or may be too painful. Some have found memorializing their baby on anniversaries to be helpful. It is important to know that each year you may feel differently- this is normal and expected.
Reminders of your experience will present itself in straightforward ways such as holidays, birthdays, anniversaries, birth announcements, etc. It may also present itself in unexpected ways such as smells, sounds, food, clothing, etc. Navigating social media can be especially challenging as people celebrate their pregnancies and babies. As you continue to heal, it is possible to take steps to develop coping strategies for those instances when you are presented with reminders. Working with a mental health provider can help you determine coping mechanisms that work best for you. It can range from taking steps to plan a “reminder kit” for self-care, connecting with your support system, and even allowing yourself to feel your emotions.
Accepting your new body
The loss of your infant coupled with an amniotic fluid embolism will result in changes to your body that can diverge from the expected postpartum changes. It is common to feel a sense of loss of control or loss of autonomy, most especially when many cases of AFE cause you to be unconscious or in a medically induced coma. Experiencing an AFE can have a myriad of effects on the body including, but not limited to: infertility, organ dysfunction, hair loss, weight fluctuation, post-op scarring, etc. AFE Survivors may also experience a loss of intimacy that stem from these changes and the treatments received (e.g. c-section scarring, pelvic floor dysfunction, pain during intercourse, etc.). The time it will take to learn to accept these changes will vary and it is important to work with your healthcare providers, mental health professional, and your partner to process and address these feelings.
Your first visit to the OBGYN after loss
The first visit to the OB/GYN following infant loss and an AFE can be a triggering reminder of your loss and trauma. If possible, try to set aside some time before and after your appointment to engage in activities that help your grieving process. It may also be helpful to limit some triggering questions from clinical staff unfamiliar with your circumstances by utilizing the Patient Clinical Summary. When scheduling your appointments, ask the scheduler to note in your file that you experienced a loss and that you would appreciate the opportunity to avoid unnecessary triggers and a room full of pregnant patients. Consider making appointments for the first or last part of the day and enlisting your spouse, partner, family member or close friend to join you at your appointments.
Lactation after loss
Reverberations of infant loss include feeling a sense of loss for the dreams and hopes, including plans to breastfeed. Depending on the circumstances, your body may continue to lactate which can result in engorgement and pain. You may choose to speak with your care team to suppress lactation or you may choose to pump for relief until your body slowly stops producing milk. You may also choose to pump to donate milk to others in need.
Check out:
Pregnancy after loss
It is normal to consider pregnancy after infant loss and for those feelings to change over time. The decision to become pregnant again is a deeply personal one that will depend on various factors. You may spend time exploring this option with yourself, your partner, social supports, and healthcare professionals. You may also seek peer support and reassurance as needed while allowing yourself the space to continue processing your grief along with feelings of guilt and anxiety that may arise from a new pregnancy.
Check out:
Sisters in Loss (BIPOC)
Push for Empowered Birth- Pregnancy After Loss Resources